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Monday, 16 July 2012

A Nice Lady from the DWP

There are probably now more things I can't write about on my blog than things I can at the moment.

But yesterday, one of the Things I Cannot Share went official, and it's GOOD NEWS!!

Out of the blue, after 19 MONTHS of trying to claim disability living allowance (DLA), a nice lady suddenly phoned up. Out of the blue. I knew something was afoot because she was a nice lady. From the DWP.

I was not planning on picking up the phone at all. I was so low and depressed, I could barely make myself have a bath or brush my teeth. It had been a Bad Week. When I say a "bad week" that's a bit like saying Hitler was "a bit mean" or the Titanic "hit a bit of a hiccup"

But most of the badnesses were Things I Cannot Share and there are only so many times you can tweet "I'm so depreeeesssssed" so I just sort of mooched around feeling dreadful.

Yet suddenly, there I was, my answer machine chirping away with the nice lady from the DWP and I hovered by the handset, suspicious and to be honest scared to even talk to another human - especially one from the DWP.

"I'm phoning from the DLA department. I have some good news for Susan Marsh.....

I shook my head in bewilderment...

"We've come to a positive decision on Susan's DLA appeal.....

I snatched up the phone and tried to sound like I speak to real humans

After a few security questions, the nice lady told me that following a letter I'd written two weeks ago, refuting a piece of evidence they had added to my file, that they had reviewed my case with a Proper Doctor. A doctor who knew about bowel disease.

Goodness only knows what this doctor had said, but the nice lady then apologised!!!!

Yes, she apologised for disregarding the evidence on my form. She said they understood that crohn's can be very Fatiguing and Painful, but most cases were remitting - the patient went through periods where they were often well. She said they now realised my crohn's wasn't that type at all and she was sorry. (Again.)

She said they had awarded me a "lifetime award" of DLA at "very favourable rates" so that I "wouldn't have to go through this again" (I let it go that "lifetime" awards haven't existed for some time and that the introduction of PIP next year would negate all unlimited awards and stayed schtum.)

I asked her if she could tell me what the award was, but she just repeated "No, but it's very favourable." She would phone the tribunal that day and let them know and I could expect to get DLA and full back pay very soon.

I wibbled a bit incoherently and all I wanted to do was get off the phone. In the middle of a Bad Week involving quite a lot of medication, it was entirely possible I was hallucinating.

So we were cautiously, bemusedly, optimistic, Dave and I.

But we waited for the letter. Not the brown envelope of Doom this time, but the brown envelope of Hope. (Remember those? I do.)

Considering I've barely left the house since January, unable to get the kids to school or do the most basic of chores, this is probably reasonable. But in DLA terms it is.... well, the difference it will make to my life and my family is unimaginable.

We will go from no help to all-the-help.

It's such a turnaround, I am faaaar from accepting it.

Now the cynic might say that the DWP seem to be rejecting most claims in this way now, forcing the claimant to go through a lengthy and incredibly stressful appeals process. Then, two weeks before their tribunal date, they review the case and anyone still standing at the end gets a read through of the file with a doctor. This is certainly the experience of Citizen's Advice, and anecdotally, it is what we hear as campaigners

I went bankrupt in the time they refused my claim.

But you all know how bad I am at cynicism. The letter I'd written was very strong, a last ditch appeal to their better natures and their sanity. I like to think it actually worked - that there were better natures and sanity. That somewhere, within this tortuous, infuriating process of course there have to be good people too.

I like to think there's cause for hope, even when we think all hope is gone - well clearly I do, I fought the welfare bill. But last week, in lots of ways, I thought life was hopeless.

But today, I woke up remembering my family don't have to be poor any more. For a while at least. And that is a good enough thought for me, for now.

Congratulations Sue, Having gone through almost the same experience I still, after almost a year, have to get someone else to open the brown envelopes for me so that I can hear whatever is in it from someone who cares. Paranoia may be the unreasonable fear that there are people who are out to get you but I don't know the term for the all to real understanding that they are, indeed, intent on doing you and your loved ones considerable harm. I hope and pray that this is the end of it for you and that they stand by their new understanding when PIP is foisted upon us.

THIS is the blogpost I've been waiting every day to read since you first said your claim had been rejected. I fretted you would think it was doomed and stop fighting for it. Am sooo happy it has the right ending.

Marvellous! If only they hadn't put you, and theousands like you through turmoil in the first place. But it isn't the nice lady doing her job we should think of, but the nasty men and women making the Laws. Good news for you, I am so pleased. Xx

What wonderfult news! I knew you should be getting the high rate on both. How awful to have to wait so long and beg so hard.

Lifetime awards were replaced by indefinite awards and those still very much exist. I've seen several clients get them in the last year. But I agree that they are making people fight to the death. I had a tribunal this week after almost 18 months trying to prove I have care needs.

I spent a large proportion of it crying even though I understand the system and they still ignored my night needs and only awarded me low rate care. Although considering I don't have a GP letter that's not bad...

Don't forget to apply for your Blue Badge and to let Tax Credits and Housing Benefit know about your award. Did they backdate it? Warn anyone who would see a lump sum as an excuse to take debts back or anything that it's DLA not a lottery win, so off limits.

Congratulations Sue, although I do wonder if some pressure from 'above' (DWP not god!) was used.It is terrible that you and your family had such a financial struggle. I hope it gives others in the same position the hope to Appeal.Tls

WOOOOOOOOOOT!!!!! This is fantastic news, I'm cheering from here. Well done, well done! I really hope this makes a difference - the backpay will be awesome, trust me, it funded loads of stuff for child and sure it will for you.

(Studies show that more than 40% of people with IBD experience significant fatigue even when 'in remission' (one study showed levels comparable to cancer patients), so that lady was wrong on that one.)

Well its abouuuuut bloody time eh!!!!. Tea and cakes all round then..As one of the many who is expecting to get that dreaded brown envelope saying thth thththats all folksafter 18 years of suffering with sarcoidosis and all that entails i am more than happy for you sue.

Thank heavens for that - I just hate to think how the stress of all of this actually made your condition worse, though. Lessons have to be learned. You should not have been put though such a trauma to get what is a basic right.

So glad for you Sue, I'm going through the 'renewal' process at present and so know the stress that is caused. Shame that these so-called decision makers don't have an ounce of compassion or empathy, otherwise a lot more people would be getting the benefits they are entitled to without having to fight tooth and nail :-(

Great news Sue.Purely anecdotal I know, but it seems quite a few people have had good news of exactly this type recently.Could there be a slight change from the powers that be - you know to try to pull back some of the criticism they've had recently?There again, I tend more towards the "Now-the-cynic-might-say-that-the-DWP-seem-to-be-rejecting-most-claims-forcing-a-lengthy-appeals-process-then-two-weeks-before-their-tribunal-date-they-review-the-case-and-anyone-still-standing-at-the-end-gets-a-read-through-of-the-file-with-a-proper-doctor" theory of decision making at the DWP, old cynic that I am.

I am so happy for you! I never understood how they turned you down: my husband won the lower rate on appeal, for his ME. He suffers, but nowhere near the scale of your suffering. Justice has been done to you; but it is disgraceful that it has taken so long.

PS For some reason, I'm showing up as anonymous. I'm not; this is me: http://thelaughinghousewife.wordpress.com/

i am rely pleased for you getting what you are entitled sue . it is such a shame that you and many others have been put through all of this worry .i had the good news in a letter after another, medical at home for highest rate mobility and middle rate care. 4 months later i was sent another form to start the whole process again. then i received another letter saying that i should have this letter in by a specific date in april, els my claim will be stopped. so since then i have been put in the state of worry waiting every day for the postman .i just want to get it over with. i dont think there is any nice people at the department of works and pensions, any one who causes distress to the sick and disabled as part of their job is complicit with the anti disabled and to put people through such worry are vile. i dont know how they can sleep at night . i am glad you are fine sue, i thought something was wrong as i did not see you on hear last week , i hope you feel alot better today steve.

Brilliant news. I know the downsides (as another indefinitely awarded DLAer myself) of PIP coming in etc but so pleased you have it for now. It is a few months of worrying a bit less I hope and maybe less worry will make things better when you have better days.

Well done for fighting them so hard as well, I know from friends how demoralising and dehumanising it all is.

well done sue I'm very proud of you I've fought and battled with the DWP for over 30 years as some of you may know and it's never been easy not even all those years ago

you start off on the low rate for both and after 10 Years they moved my care to the middle rate and left my mobility at the low rate they say they couldn't justify a high mobility rate as i can walk unaided albeit in a lot of pain so in reality cant go out but can live with the low rate but have to stay in as if you get reported by someone for going out you lose it and have to appeal to get it back

The DWP have always tried thou to take my money back in one way or another so I've always had to fight hard to keep it and i guess that's the way the system works for some people and like in sues case they made her wait and for a long time hoping she would go away

Once again sue well done you will find that they backdate the benefit from when you first claimed and hopefully it will be many thousands of pounds to clear off all your debts and that you will start a afresh as you have put yourself out for so many other people and have helped further our cause for justice more then most

Doing the Happy Dance (in my mind) for you :)However this rightful award does not compensate you for all the stress & suffering of bankruptcy, poverty and depression foisted upon you by this heartless and unjust government policy.

indeed the stress sue will have been under will have been horrific and as i know from very good experiences in seeing many people over the years taking their own lives through starvation as the stress has left them unable to eat so therefore they have slowly died and we must remember these people who have died alone and in private in where the numbers are huge

stress is the biggest killer don't forget which will bring on a heart attack at best or leave you unable to eat at worse and both will kill you at any given time of the night

I myself have had two neighbours over the years die at the hands of the DWP through stress leaving them to die of starvation and me guilty for not helping them to a level in which through my own illness couldn't maintain

woo Hooooooooooooooooo That is so fantastic!I just pray that when PIP comes in we wont all be fighting the same battle of never ending stress.

It has made me so much more ill just waiting for the letter of doom about ESA. Then DLA, not that either will ever make me well again - But they seem to think writing that you are well will make you well (If only)

How wonderful! And even more so as less than an hour ago i received a letter saying my backdated DLA Tribunal award is on its way to my account so am off to celebrate with a cappuccino I can finally afford to buy! x

yes that would be a whole new blog!What we have not spent money on for x years... in some perverse way we are probably highly competent money managers by now...won't it be lovely to still get the best bargains AND a few pressies (clothes for me!) for our selves and others(couldn't even afford a little something for my granddaughter's birthday recently and felt so bad...)AND actually get on with the business of getting better/seriously alleviating our symptoms.Wishing you and your Mum a fruitful girlie outing very soon!

Such fabulous news, Sue - I'm really pleased you won't have to struggle through an appeal/tribunal hearing, and hope you'll get all the back-DLA paid from their original refusal date.

Oddly enough, I also had a "nice woman" from DWP ring me a couple of years ago when my DLA was being "reviewed" - they noticed I hadn't died (had my DLA under "special rules" six years earlier, when I was dx with terminal cancer) and made me put in a full application, even though I hadn't become less terminally ill. Nice woman rang to clarify some info and was desperate to give me HRC element, but I didn't need night care at the time. Silly me.

Not looking forward to next year - I'm retired & have state pension but under 65, so will probably be "reviewed" for PIP sooner rather than later. Still have terminal cancer, and greater care/mobility needs, but not confidant about PIP descriptors, like so many others.

Hope this little piece of good news helps you & the family cope with all the other issues. Sending you much love. x

I realised I posted this on my FB Wall when really you should be the one to see it, so here's a copy & paste:

"A fantastic and fair result at long last for a lady who put her life on the line -quite literally- for the cause of the disabled. What is absolutely infuriating is that she had to be put through all this in the first place and that the stress of it all added so much misery and suffering to her already more than stressful and miserable condition, and that all she got was a 'sorry'.

But at least for a bit, until the dreaded PIP is rolled out at least, Sue Marsh will at last will be able to concentrate on her health rather than where the next meal for the kids will come from. I wish her and her family all the very best, she is truly a very admirable lady. ♥"

great news Sue, although I've emailed you on what to do next... and that is: TO MAKE A COMPLAINT ! all info on how to do this and why, is in my email. don't be afraid to complain about how you've been treated by the DWP "as a Customer".

I'm glad the numpties at DWP have finally got their collective act together and got around to making the right decision for you Sue. I think they have treated you disgracefully and in the shabbiest of fashions and I hope that you'll take your complaints about the DWP decision making process further.

I also hope there is a nice big back-dated payment winging it's way to your bank account as well! Treat yourself to something nice - you deserve it.

As we say in Yorkshire , Sue..."I'm well chuffed for you!!" No-one I know has fought longer and harder for the sick, vulnerable & disabled. I hope when you get your back payment, you will be able to spend some REAL quality time with your family, indulging and pampering, yourselves. Your good news has cheered me up so much I may even forgo my antidepressant tonight :-)) WELL DONE YOU!!!!!!

I have been awarded the Highest Rate for Mobility and middle rate "indefinitly" as my condtions caused by mightily agressive cancer treatment are lifelong and incuable. And, through my MP, i recieved a letter of apology from the DWP and £25 "consolatory" payment to quote "consolatory payments are not recpmpense, they are not designed to reimburse customers for any financial loss. They are a token of the department's recognition and apology for any inconvenience." I also have the name and adress of the Benefit Centre Manager at my local DWP, to whom all future correspondance will be addressed under registered post.

Additionally, if you do not get satisfacion, write to

TERRY MORANDWP CHIEF OPERATING OFFICERPO BAX 50101LONDONSW1P 2WU

I would suggest that you cc your complaint to your care team, MP, MSP (Scotland), national press - lots of journalists are avidly following this issue.... and demand an acknoledgement with a stated timeframe.

This has totally exhausted me, brought me to the point of a breakdown, but getting that letter of apology was worth it.

Congratulations Sue, I hope this will reduce your stress levels significantly to 'normal' family and disability stresses instead of the dreadful worry you had been enduring which undoubtedly increased your illness. Enjoy it and some much needed independence. I wish you a positive result when PIP is assessed too x

I also think sue that what you have achieved and the way you have should be in the newspaper as I'm sure like most people who read this blog have found the past couple of years in what has been a very gripping story of your health and battles not only for yourself but for everyone else through the highs and lows of life of being sick and disabled inn the UK

The only time i can remember such a gripping story was when John Diamond became ill with cancer and each week he wrote in the mail on how things wee going and as always was a riveting read always keeping the readers on tenterhooks week in week out

If i were the prime minister i would award you a title as a Baroness as you have personally gone through so much but at the sometime taken us all with you on a journey never knowing what lay around the corner and still never giving up and having known many lords and ladies in my time you certainly rank in my mind as number one and by a good margin and even your friends that you know would find my statement hard to disagree on

You so needed a break, Sue, this is very good news. I believe DLA claimants with indefinite awards will be the last to be migrated to PIP; for both you and me I hope that's right! But for now, enjoy having enough money to manage, and the feeling of vindication that they listened at long last...

Congratulations on lasting the course! (or should that be 'gauntlet'?)

Finally giving up on an indefensible position a couple of days before the court case is a tactic you usually see with the more dodgy insurance companies, shady lawyers and the like - so I guess it's not surprising to see DWP in that company!

:) :D Cool you got it. It would make sense if borderline people were being rejected. But you are a double higher rate unlimited? So it looks like they are rejecting everyone without really thinking about it?

WELL DONE SUE. bUT SPARE A THOUGHT FOR THE BLIND WHEN PIP COMES IN THOSE THAT DONT SEE NEVER SEE THEIR CHILDREN SMILE LAUGH OR PLAY, TAKE THEIR LIFE IN THEIR HANDS EVERY TIME THEY GO OUT, CROSSING A ROAD CAN BE LIFE N DEATH VUNERABLE TO ATTACK AND CANT SEE IT COMMING WHO THE NIGHTMARE OF PUBLIC TRANSPORT IS THE ONLY THING ON OFFER, THEESE PEOPLE ARE BEING TOLD THEY WONT GET A LOOK IN AS THEY WONT MEET THE RULES AND YES IM ONE,AND PLEASE DONT BELIVE ALL THE RUBBISH THE RNIB PUT OUT THEY ARE VERY CAREFUL NOT TO FIGHT TO HARD AND SPREAD THE DEFEATED WORD OF THE GOV MAYBE BECAUSE THEY SEEM TO DO VERY NICELY OUT OF GOVERMENT MONEY FOR TRAINING PIANO TUNNERS AND TELPHONE OPERATORS , BUT NOBODY SEEMS TO REALISE AUTOMATION AND WHO HAS A PIANO TODAY I KNOW DAVID BLUNKET IS A SUCESS NOT LOL BUT WHAT CHANCE THE REST OF US 3 MILLION UNEMPLOYED I WOULD EMPLOY A BLIND CLEANER WOULDENT YOU? THATS IT OFF MY CHEST BUT IM GLAD TO HEAR YOUR NEWS,

AND FOR JANE PIP WILL BE INTRODUCED ALONG SIDE ANY ESA REVUE SO YOU WILL GET BOTH ASSESSED ON THE TWO YEAR CYCLE THATS THE POLICY AND FOR EVERYONE WHO ONLY GETS DLA ALFABETICLE AS USUAL, SORRY TO GIVE BAD NEWS BUT IT REALY WILL BE THAT BAD. AND SUE IS RIGHT LIFETIME AWARDS IS WHAT THE CONS HATE AS MANY HAVE THAT WITHOUT EVEN A MEDICAL UNBELIVABLE BUT TRUE, SO ENJOY YOUR MONEY WHILE YOU CAN BUT THEY WILL BE CANCELLING AWARDS AT RECORD PACE BELIVE IT.

I TO SUFFER DOWNSTAIRS AND NEEDING THE TOILET MIN BY MIN AND APPLY CREAMS AND OTHER THINGS TO ONES BOTTOM EVERY HOUR AND TAKE DRUGS WHICH MAKE YOU SICK ANYWAY AND THE SMELL IS SO BAD NOBODY WISHES TO SHARE A LOO WITH YOU,I WOULD LOVE CAMERON TO EXPERIENCE THIS FOR A DAY AND WEAR A BLINDFOLD AND THEN HE COULD DO A DAY IN MY LIFE, WORST THING FOR ME IS IF I GET THE WRONG TUBES IVE PUT ANY MANOR OF THINGS ON MY BUM FROM TOOTHPAST TO IMAC SO ITS NO PICNIC SOMDAYS AND I WOULDENT WISH IT ON ANYONE BUT GET THEM TO UNDERSTAND, YOU ARE KIDDING I LOVE YOUR POSTS MY WIFE READS THEM TO ME BUT I FEEL WE ARE ON A COURSE TO SAVE THE RICH AND PERSECUTE THE TRUELY SICK AND DISABLED AND HOPE I DONT PERSONLY HAVE ANY ITS JUST CUTTING UP THE SAME CAKE AND EACH TIME THE PEICES GET SMALLER AND SO IT WILL BE IM 50 AND I DONT THINK WE HAVE ANYTHING TO LOOK FORWARD TO NOT THAT WILL BE GOOD BUT THATS LIFE AND WE WILL JUST HAVE TO ACCEPT MONEY IS ALL IMPORTANT PEOPLE DONT MATTER AND THATS THE WAY IT IS,

Lucky you is all I can say. I've been diagnosed with Crohn's for 13 years. I've applied for dla and appealed pretty much every year since then and gotten nothing despite nearly dying from flare ups several times. I'm not a spend all but I'm in so much debt from all the times I've not been able to work. It really doesn't help my condition.

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About Me

I have a rare form of Crohn's Disease. I was diagnosed 21 years ago and have had many operations to remove strictures (narrowings in my bowel that grow like tumours) I suffer daily pain, often vomiting, malnourished and weak. I take mega-strong medications every day including chemo-style immuno-suppressants, opiates and anti-sickness injections. Sometimes I am fed into my central vein by tube, other times I can enjoy a nice meal out. I have children that I often can't look after and a husband who often looks after me.
Our lives are disrupted daily by the misery of a chronic condition.